Handhold NICU baby

[gollyimholly]

I'm utterly heartbroken. After a healthy uncomplicated pregnancy, my gorgeous little baby was born on the due date and for the first couple of days everything was perfect. And then began various symptoms that meant doctors suspect a rare disease. We got transferred to the NICU where they've since cannulated 5 different times, taken countless heel pricks, might have stoma bag put in and is being fed via a long line. In two short weeks my little bub has gone through so much pain and is likely going to need surgery in a few months. And with possible complications for life.

I'm also struggling with feelings of envy which I know is bad but it feels especially unfair as family and friends have had healthy babies in the past few months (in fact we know 5 babies born in the last 7 months and another 3 due in the next couple of months - all close relative eg. Sister, BIL, SIL, cousins, best friend). And it feels so unfair that we are the 1 in 20000.

Everyday feels like I wake up to a nightmare. I had a c section and given the nature of NICU there's nowhere for me to stay. So I take a 40min taxi everyday to the hospital and DH sleeps in a chair next to baby.

What do I do MN? I can't think straight. It's been 2 weeks with no sight of going home. We also have 3 year old who is feeling very neglected by her parents (she is otherwise well looked after and at her grandparents). Any advice from other parents who have been through similar on how to navigate this time is much appreciated too x

Hello, I’m so sorry that I don’t have any advice but I saw no one had responded and I just wanted to say that I’m so sorry you and your little one are going through this and I really hope you get some answers and peace soon. I cannot imagine the anguish.

Have you enquired if there is a Ronald mcdonald house or something similat you can stay in whilst baby is in the nicu. Normally they are onsite or walking distance to the hospital. It will save you the taxi fair everyday

Hi OP, I have been there and it's so hard. You will also be sleep deprived which makes it worse.

We had twins in NICU and 3yo DD1. Twins in for 2w then 6w of strict regime of being at home with daily nurse visits, then under consultant team for further year.

It is such a shock. My advice looking back would be, do one small quality thing with eldest child each day
Lean on grandparents and friends
Express honestly to the nurses if you are finding it hard, sometimes they can do little things to help

And it will get easier, it will. I remember that time as a fog of stress. Today DTs are nearly 8 and actually fine.

I had a stillbirth very late and my baby would have faced a very uncertain future with several rounds of surgery and would have gone straight to NICU if he had survived. I think your envy is very understandable. I had it too. I don't know how anyone could not feel angry and envious when they are enduring something like this whilst others are having the newborn experience we all expect we'll have. Try not to think of yourself as bad for finding this hard.

I'm so sorry you're going through this. It was hard enough being able to stay in hospital with my newborn baby when she was poorly so I can't imagine how utterly drained and lost you must feel.l with the added drain of travelling back and forth. Your life has been turned upside down. Just to send you a sincere and heartfelt hug ❤️ xx

At the cost of a return taxi of 40 mins each way is there no air b and b nearby you could rent and have your 3yo with you? You and DH take it in turns to do nights at the hospital?

Other than that of course you feel jealous. No one plans for this. No parent wants this and you want the newborn experience we all want.

be kind to yourself.

Oh OP sending love it's so hard. I've been there and it's just brutal. Hope things improve and become clearer for your little one soon. What helped me was being there for one part of my toddlers daily routine every day - for me that was 5pm home from nursery, cuddle milk and early tea. Then grandparents/DH did everything else. It helped keep me grounded and also he knew to expect me there everyday so felt less neglected I think (hope). Wishing you all the best x

Hello everyone, thank you for your kind words x
We've been updated that we could be looking at another 6 or so weeks and possibly longer.

Thank you for the air BnB suggestion @itsgettingweird we haven't taken it in turns yet because of my slow c section recovery but from next week I will. Also we're going to organise an Airbnb now that we understand we have a longer stay ahead of us.

@tangobravo yes I think we'll definitely have to do something like that with DD, good idea.

This is honestly the scariest and toughest thing I've ever been faced with. I am exhausted and desperate for things to improve with our newborn and feel so completely helpless.

It's so hard, not to mention having to recover from birth too. Our NICU had a clinical psychologist on staff that I had a couple of sessions with which helped me. I think personally the hardest part for me was the emotional whiplash of improvements not being linear - like one day we were preparing to come off the vent and the next day he was worse than ever - so it was like being in a constant state of panic over the next update! I really hope your little ones journey is smooth and that you're all home as soon as you can be. Do you have the knitted squares to put in your bra/in with them? I liked the routine of swapping those out, it was the only thing that was just for me to do 🤷

Just by way of a sad update: we've been told we can expect to be here another 3-6 weeks. We are going to skip the air BnB idea and try to do it from home. The reason being our 3 year old seems to be really regressing and having stayed at her grandparents' for nearly 3 weeks without me or DH is really starting to impact her - wetting herself, stuttering is much worse, biting, hitting, speech almost baby like. I think she really needs to go back to her old routine.

I feel so helpless and failing both children now.

I am so sorry, this sounds awful.

We were several weeks in NICU with DS but he was our first so we were lucky. Nevertheless, it is a trauma for all parents. We ended up speaking regularly with the lovely hospital chaplain. We see both atheist and she didn’t mind this at all.

The hospital was over a hundred miles from home. We weren’t allow to stay, but it was reassuring that he had a one -one care from a nurse at all times.
There were a lot of little ones whose parents had siblings and understandably couldn’t be there as much and they were very well cared for. Those who could come out of their cots had lots of cuddles etc.

DS has needed further admissions and surgery over the years and we have DD. We would all go to where the hospital is, and take her out of school if needed. And then we tag team. We are lucky that sometimes the play workers will take her to the playroom and that there are Ronald McDonald houses. We have no family that could take her.

Now the children are older, one of us goes with DS and the other one stays with DD.

Take it a day at a time. Try not to feel guilty -easier said then done, I know. Could a grandparent spend some time at the hospital while you have time with your daughter? Your baby won’t be damaged if you are not with him all of the time, I promise. And you both need to look after yourselves too, even if it is just a long bath with a book. Are you pumping/BF or bottle feeding? I almost killed myself expressing every 2 hours day and night and I look back now and question why I just didn’t formula feed.

Finally, if it transpires that your son does need ongoing hospital involvement as mine does - both of mine love the hospital and speak fondly of their trips there.

I don't have any practical advice, but I couldn't read and run. Sending you virtual hugs and I hope it does get better. I assume you've asked hospital about whether they have a Ronald McDonald house or similar that you could stay in as a family? You could potentially all stay there and then one of you have DD in the house while the other is with baby and swap.

You're not failing either of them
I had a preemie to at 27 weeks with only a 16 month gap, she was in a hospital an hour away for first 3 weeks then forty minutes for following 5 until discharge
Tbh I prioritised my eldest and didn't visit every day due to distance. My two are now 33 and 32

Hi, how are things going? We also had a child in NICU - it ended up being 8 / 9 weeks but after a week of staying in hospital with them, the NICU nurses said our older child would need us more so I went home. The routine then changed to my husband going at 8 a.m. to see the baby for 40 minutes before going in to work. I stayed/ played with our older child till c 10 a.m. when my parents came to drive me to the hospital bus stop (couldn't drive due to section..I then got to the hospital in time for the midday feed and did that. And stayed for the afternoon. My parents took our eldest to their house.

At 4.30 my husband came back to the hospital and spent the next hour together before driving me to our parents house for dinner / to collect our eldest. We went home, read a story and put our eldest to bed.... And repeat.

The NICU nurses kept telling us to concentrate on our eldest and they would look after our youngest and not to feel guilty. They even suggested to me after c 5/6 weeks to take a day off (my husband still went in morning and evening on way to / from work) to let my body recover / spend the whole day with our eldest. They always promised to phone if they needed us. They kept to their word and I had that one day with our eldest.

Only other thing they pushed us to do... Keep a diary at your NICU city and write in it each day. Although there will be good and bad days, looking back over it we could see the small gains and it's such a momento. Thinking of you!

Thank you for your lovely messages everyone
I feel completely broken, just want DC to turn a corner now. Have been told weight gain isn't really happening and has dropped from 95th percentile to 25th to 9th. We've been in the NICU for 44 days now. My older toddler can't shake a cold that she's had forever. We've been staying at my mum's house which is 20mins closer to the hospital than our house. My toddler's nails need clipping and I can't find anything anywhere in this house. I feel like I'm going mad. I do desperately want improvement and it won't happen. My life feels like such a mess.

oh I’m so sorry. I can’t imagine how difficult it must be. The jealousy is very normal, I don’t know how you couldn’t feel any envy. I’d be exactly the same. I’m sorry I have no practical advice, but just wanted to send love and strength. I know it might not feel like it, but you’re doing an amazing job for both your children.

So sorry to hear this OP. Must be incredibly tough. I had a NICU baby but only for a very short time. The nurses told me not to worry about them being alone (I had an older child) and that you shouldn’t feel pressure to be with them all the time. They are asleep a lot too.

sounds like your big one needs you. Wishing you a speedy section recovery

Hang in there..... you are doing amazing! A day at a time - keep thinking that they told us and try not to count how many days (I couldn't not and was well aware we were there the 2nd longest that year). Concentrate on you and your eldest - give her lots of cuddles. As others have also said the NICU staff know how hard it is with an older sibling and to focus on them (really, really hard, I know). Looking back, if I were to change anything, I would start one parent (alternate?) taking at least a day off each week to spend with the eldest and not do the hospital run. Though, if any help our eldest doesn't remember us being away every day at the hospital to see our NICU baby and being left with the grandparents. My parents say eldest got spoilt rotten by all the people visiting / asking after us when they were out. Sending strength.....

I remember this vividly.
My DS was in for 3 long weeks...

It will end / things will get better
🫂
I would try and divide and conquer with your DH.
Is your dd normally in nursery or a CM?

Luckily ours was in childcare so we kept her in and would spend 5-8am and 5.30-8pm with our oldest then go back for the baby.
So DS was alone for short periods..
nicu nurses reassured us this was okay.

We also tag teamed a bit so sometimes especially weekends. I would go solo and and dh would do something fun with dd and then we'd swap sunday. Id still visit DS everyday

Look after yourself - make sure you are eating properly (i spent a fair bit on M&S healthy ready meal type things)

It's been 6 weeks. I am barely functioning alone with DD. She is not in nursery. We aren't near home and so we've had to pull her out. DH hasn't slept at home since DC was born. I stay nights with DD at my mum's.

@gollyimholly bless you, this is truly hell on earth for you.
Every pregnancy is a lottery and I think these days with all the prenatal testing it comes as much more of a shock when there are problems after a full term pregnancy.
You are having to deal with that grief and shock, your own recovery and the extreme anxiety of both day to day and the unknown of the longer term. Plus having another child to care for. I think anyone would be broken by that.
Thinking of you and hoping that turning a corner is very near.

I'm so sorry to hear this, NICU is a really tough time, one of mine was in for over 4 months with a condition that wasn't able to be picked up before birth and required 2 surgeries before discharge and 3 different hospitals, the other 78 days with straight forward prematurity, and it is like a time warp even without post natal hormones. Are they any closer to getting some answers for you on what is challenging your little one?

The feelings of jelousy are completely normal, a nurse once said to me 'no one has a completely clear run of this, they struggle to get pregnant, to stay pregnant, to deliver, they have a sick baby, or a suprise diagnosis crops up for their child but families just don't ever expect it because it's not usual at each stage' and that did help me to frame it (even though actually she's ended up with life long struggles, but she's alive and happy when we once were told not to expect that and beyond that we came to see everything else was just a bonus)

I just can't do it anymore. I am just writing out my thoughts. I don't want to burden DH with my feelings, he is already trying to keep it together alone in the hospital. It feels impossible.

Just wanted to send you a hug. I’m so sorry you and your family are having a hard time. This too shall pass.
its 20 years since my baby was in NICU. I pray you can look back at this time with relief in 20 years too. 💐

I’m sorry OP. You must be mentally and physically exhausted. I know it doesn’t do much, but you will all be in my thoughts. Please vent anytime.